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15 September 2014

Traveling with Liam isn't the easiest thing to do, let alone flying in an itty bitty plane. It's actually quite a feat to be sure. I have to call ahead to the airline and make sure they are aware that I will need extra time in order to board and help with his wheelchair/car seat/bags/etc. This is to our advantage as it means we actually get to board before everyone else. It's actually a huge relief to not have everyone's prying eyes watching you try to wrangle an almost 7 year old into a car seat when his body is fighting you every step of the way and in such a tiny spot as an airplane seat. I've received many fat lips and bruised eye sockets from his flailing fists and the less people watching that happen, the better my psyche will be. And since we exit last, no one is around except for the flight attendants and they are usually very helpful to me, asking me what they need to do to accommodate Liam and expedite our departure.

Liam is fed homemade food, not the commercially prepared cans of formula that he used to get so this time our travel has a different set of requirements regarding transport. Since he's g-tube fed and entirely dependent on what I make for him, I will be making all of the food in advance, freezing it, and packing it in gel pack freezer packets for the duration of the trip. When I called ahead, I asked the airline if it will be a problem bringing his food on board and she said no, they can't keep me from bringing his medically necessary items. She says that, but you watch, they are going to be eyeing me suspiciously when I try to get through security with four 32 oz containers full of liquidy goodness. Oh, you don't want to go through x-ray with the wheelchair? We get an automatic bomb residue check. Hooray.

Liam lost another tooth yesterday! That makes for 3 empty spaces in there!

We only have $782.40 to go! Liam has the best friends, truly. Thank you for all
your prayers, questions about how this all works and our expectations
from it, and for your continued belief that God is still in the miracle making business. This trip wouldn't be possible with out all of you.

03 September 2014

I could use your help! I am beyond amazed in telling you that Liam's next stem cell trip is now 92% funded! I am blown away again by the beautiful generosity of God's people and have watched in awe as you love on us and Liam and give out of the overflow of your hearts.

Because we are so close, we have stepped out in hope and faith that the last amount needed, $1,082.40, will be supplied in God's perfect timing.

So, we have gone ahead and set the date and bought the tickets!!

Liam will be getting an infusion of his own stem cells on October 2nd!! 😱

Please pray for the remaining money to be provided. We are so close!

Also pray for good weather (no hurricanes!), and for a safe procedure with miraculous results. I am never in doubt that we serve a big God and he is fully capable of answering big prayers. I am always amazed at how he works things out and trust that this will all go according to His plans. So please join me in praying for big, crazy, bold changes for Liam.

I never imagined God would provide most of the money for this trip with out us having to fund raise or even announce to everyone that we were even thinking of going again someday. And yet He boldly showed up and did just that.

I never thought Liam would go again, which just goes to show that God works in amazing ways. I assumed the last time was the only one Liam would get so this trip in and of itself is truly miraculous too!

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.